I am so scared that I might have MS

New diagnosis and before diagnosis
1

Hi all

I don’t know what I think I will acheive by posting here but I am really scared that I have MS.

A brief history…

I am 38 years old, during the winter (2017) I suffered with tingling and numbness in my finger tips, my dad has reynauds so when I saw the GP I did mention that but she thought unlikely as I had no pain or redness. Other sypmtoms at the time were strange sensations in hands and feet when in the shower or bath and urge to wee.

I am an anxious person especially when it comes to health so all around me just tell me to stop being paranoid. I of course googled my symptoms and MS was something that came up. I did mention this to my GP but she said MS did not present itself like this. I can’t remember the reason she gave for the tingling but she said the urge to wee was probably an overactive or over sensitive bladder caused by damage to pelvic floor etc during two pregnancies and births (I did have pelvic floor issues after child birth).

Then early in 2018 I was at the park with my son walking our dog before going to school (something we always did) and suddenly from nowhere the world felt like it was spinning, I couldn’t walk in a straight line and only just made it back to the car where I called my dad who came to pick me up. I went straight down to the doctors and she said it was labrynthitus (not sure how she made te diagnosis).

Recently my urge to wee has got really bad, and over the last few weeks I have noticed my arms and legs feeling weak. I am a fit active person.

I feel frightened.

I am already undergoing tests as have been suffering with breathlesness since I had a miscarriage in August 2017, I am/was asthmatic but a recent chest x ray (which showed over inflated lungs) followed by a spirometry test has said that I am not asthmatic. I have also wondered whether this could be hormonal as since the miscarriage I have not physcally felt well and my monthly cycle is causing me many problems when it never did before.

I can’t get in to see my GP until 19th of this month (he was keen for me to try and keep to seeing him as easier to deal with an issue if lots of different GPs aren’t involved). I don’t know how I can wait until then, I am anxious, afraid, short tempered with my chikdren and husband, unable to concentrate but I am also scared to say to him that I am worried I may have MS they probably already think I am a hypochondriac (like my family do!).

I feel utterly desperate

Apologies for the panic and overall negative tone of this message

Best wishes

Anna

2

hi anna

there are a great many people who are told that it’s all in their heads, which is quite rude in my opinion.

you could ask your gp if it could possibly be a neurological issue but try not to sound too anxious, just curious.

meanwhile the bladder and bowel clinic is where you should go.

you can self refer or ask your gp to refer you.

they will scan your bladder (ultra-sound) to see how much you are holding/retaining.

they will give you options of medication or catheters.

i was horrified at the thought of using catheters but i use them 4 times a day now.

i hope that your gp decides to send you to a neurologist because you will worry yourself sick until then.

carole x

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Dear Carole Thank you so much for replying. Do you think it sounds like it could be MS? I’ve just had a disagreement with my hubby who says that anxiety and worry is worsening all of my symptoms. He thinks I should tell the GP I am worried about MS but I’m unsure wherher doctors feel that whole self diagnosis thing is not the done thing and will take me less seriously and just think I’m a hypochondriac. Hubby also thinks if GP says he doesn’t think MS then i just accept that… I am beside myself with worry. I will look into the bowel and bladder clinic thank you for that suggestion. Xx

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Hi anna, I’m 39 and was diagnosed with ms this time last year. I had 2 bouts of optic neuritis and weird sensations in my arms and legs. They found a few lesions in my brain after the mris and finally was diagnosed with it properly by a positive lumbar puncture. I think you should absolutely go and raise the concern with your doctor. They are there to help and support you and they will. It is so hard to know if it sounds like ms, as ms is so different for everyone. I’m not even sure if itches and twitches i get are ms and i know I’ve got it! If it does turn out you do have it, and finding out can take an age, it really is not that bad. At least you know that you have it, and can start looking after yourself positively, through diet or life style or whatever else you fancy… I’m on drugs twice a day and so far so good. It is not a death knell, it is just a label and for me, it was a relief in a way. Tell the doctors your concerns, maybe think about taking vit d and k, it’s good for everyone irrespective of ms, get lots of sleep and eat well. Very happy to answer any questions if you have any, this is all really new to me too! Take care, thinking of you.

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Anna,

Bless you, you’re going through a really difficult confusing time. You’re hubby is correct about anxiety and worry worsening symptoms. Try and “keep calm and carry on” but also have an open discussion with your GP at your next appointment. Don’t let stress make you feel worse, stay positive. Sounds like you have a wonderful family around you, try not to even think about MS which you may not even have.

All the best

Tippy x

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Thank you so much for this kind message. I guess part of me is scared of getting a diagnosis and secondly I feel ridiculous telling the dotor that this is my worry considering the main reason I have berm going of late is due to breathlessness that I have been suffering with… Then I’m going to suddenly say I’m worried I have MS. Maybe he wont take me seriously with the amount of worries I have xx

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Tippy this is lovely and you have made a very good point. I am just worried the doctor will think I’m ridiculous with all that I am worried about. At the moment I’m seeing him for breathlessness that Ive been suffering with since a miscarriage, I’m waiting for a cardiac appointment to come through and have just had a chest x ray and a spirometry test so my appointment with GP is too go through those results. But since I last saw him some other things I’ve been suffering with has got worse and along with some symptoms I experienced during winter my googling got the better of me and I found MS and have now convinced myself this is what I have Xx

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Hi Anna

Dr Google would be struck off if s/he were a real doctor. The number of people who become convinced they have MS after googling symptoms is incredible.

As your GP is not a neurologist, it’s not necessarily true that ‘MS doesn’t present like this’. MS presents any damn way it likes. There are lots of people told, ‘you’re too old’, ‘you’re too young’, ‘the symptoms don’t look right’, for MS. The fact is that MS does present in lots of different ways, for different people, of all ages.

That, by the way, is not meant to make you worry even more. It’s basically to say that having Googled your symptoms and come up with MS, is meaningless. Because MS is such a contrary beast, there is no such thing as a ‘typical presentation’.

What you could do (in addition to following Caroles excellent advice to see a bowel and bladder specialist nurse), is to see your GP again. Explain that given your labyrinthitis, bladder problems, numbness and pins & needles, you are worried that there is in fact a potential neurological explanation and please would s/he refer you to a neurologist.

Don’t be too specific that you think it’s MS, chances are it isn’t. But, you can only find that out by seeing someone qualified to tell, ie a neurologist.

In the meantime, write down all the symptoms that you are tying together. Try to put a timeline together, and use this as a basis for a bit of a ‘diary’ as to what has happened and when. You can use this with the GP and if you do get to see a neurologist, with them too.

Try not to get too stressed about your health. It won’t help, and will probably make things worse. There is nothing you can do in the short term, you could look at it as ‘what will be, will be; it can’t be changed, so we’ll deal with it when we know what we’re dealing with’.

Best of luck.

Sue

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Dear Sue What an absolutely fabulous message thank you so very much. I think I will do just that. I guess my issue is I’ve been seeing this particular GP about breathlessness and am convinced its hormonal and he’s not having any of that… So for me to then throw all of this in the mix too he’s goimg to think I’m completely crazy… If I hadnt got this breathlessness that was under investigation I wouldn’t feel so bad but deel like I’m taking a huge list to the appointment with me that’s just going to make him think I am health anxious which by the way I am. Im so glad I posted on here. You are all so lobely, kind and helpful I am very thankful for that Xx

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Any news from the doctor?